Archive for September 2016

Welcome to the September edition of Ask Dr. Emily! We often receive questions that we want to share with all our readers. To help with this, Dr. Emily Rastall, a clinical psychologist at Seattle Children’s Autism Center, will share insights in a question and answer format. We welcome you to send us your questions and Dr. Rastall will do her best to answer them each month. Send your questions to theautismblog@seattlechildrens.org.

Q: How can I deal with a child who is hyper sensitive to sounds when we are in a mall or supermarket? My child has tantrums when they are overstimulated.

A: Settings that have a lot going on can definitely be overwhelming to the senses for children with sensory sensitivities. One way to reduce sensory input would be to provide headphones (either with music or not). Another suggestion might be distraction; offering a preferred object (like iPad, book, or musical toy) may help distract children from the things going on around them. Also, offering frequent rewards (like stickers, small food items [like goldfish, raisins, or M&M’s], or tokens) for calm behavior in these settings might help. Finally, working to reduce exposure to these settings (when possible, of course) may also take the pressure off of everyone (parent and child alike); for example, using online shopping services or phone apps or leaving kids at home with a sitter (again, when/if possible), might help to ease everyone’s pain.

Q: I’m a parent of two wonderful girls (9 and 3-years old). I am also recently (last 6-2 months) a step-parent to a beautiful young 3-year-old boy with autism; he fills my heart with joy. We only have him every two weeks, but already we have a connection. He reaches for me, and he likes it when I sing him nursery rhymes. Some of the things he does (like spinning objects) are confusing to me. What can I do as a step-parent to learn more and to help him as he grows?

A: Well, already you are doing it…by that I mean reaching out and working to gather as much information as you can. Subscribing to blogs, attending seminars (like Seattle Children’s Hospital’s Autism 101 and Autism 200 series), joining list serves, and talking to other parents will broaden your understanding and introduce you to parents who may have similar experiences. Additionally, websites like Autism Speaks and FEAT Washington are excellent resources. In addition, it will be important to be involved in your step-child’s treatment; attending treatment sessions, doctor’s visits, and engaging the “homework” assignments that your child’s treatment providers assign will help you learn about your step-child and will give you opportunities to ask the professionals questions that come up. Finally, collaborating, observing, asking questions in a non-judgmental manner, and joining forces with your spouse, who has been at this longer, will strengthen your bond with your spouse and will help you learn about your step-child and what strategies work best for him.

Most new parents will admit that no matter how prepared they felt going into childbirth, once baby arrived they realized just how much they didn’t know. Thankfully, there are abundant parenting resources to be found to help with everything from colic to diaper rash.

Parents of kids with autism however, get the award for “most humbling” parenting, as our learning curve is Grand-Canyon steep. We’ve yet to see a How To guide for handling the daily dilemmas that autism brings.

Before autism, I was quite organized and thought that if I planned and worked hard enough at something, it would all work out. Was I ever surprised to learn how unorganized my life had become and that no matter how much I put my mind to the challenges, things often didn’t work out as hoped or planned. There were days I’d be reduced to a puddle of tears in the middle of my kitchen floor. As a social worker, I was skilled at locating and navigating resources for others but when it came to my own child, I found myself humbly amongst scores of “regular old parents” trying to make sense of confusing, hard-to-access services.

As a busy parent, you may not have time to see the benefits of humility but I assure you – they are there. Here are some that I’m aware of.

Realizing you don’t know it all . . .

Allows you to ask for help, a good thing to learn, particularly early on in the diagnosis

Allows for curiosity, always helpful when trying to figure out our kids

Allows you to build a team for you child and your family- this is a team effort

Allows you to continue to ask, research, read, and explore possibilities

Allows you to share the difficulties and the successes with others

Allows you to become a skilled listener and to take the other’s perspective

Allows you to pick yourself up and try again – and again and again

What research tells us about humility and great leaders

Jim Collins is a business leader and researcher who wanted to know what is was that accounted for the differences between good companies and great ones. His team came up with a list of criteria for identifying the good (the comparison companies) from the great (Level 5). When they looked at all the variables that accounted for Level 5 companies, it wasn’t what you might expect of the leaders – that they were extroverted, aggressive go-getters. Quite the contrary, they were:

Calm

Determined

Unwavering resolve

Humble

Self-understanding and awareness

Openness

Perspective-taking

Sound familiar? Like it or not, as parent, you are the leader of your child’s team. Teachers, therapists, doctors, and other family members all look to you for direction.

In summary, don’t worry if you don’t have it all figured out. No one does! We do the best we can under difficult circumstances because we love our kids and would move heaven and earth to help them.

Here are some reminders for those times when you’re feeling less than confident in parenting:

We don’t know what we don’t know (so much is new and unpredictable)

Surrender to that truth

Stay open to learning

Calm always trumps chaos

Be aware of own strengths and limits

Put ourselves in the shoes of others

Ask for help and help others

“Before I got married I had six theories about bringing up children; now I have six children and no theories.”

John Wilmot (2nd Earl of Rochester, 1647-1680)

Is parenting your child with autism a humbling experience? Share your story with us. We’d love to hear from you!

I recently participated in a thirty-one day Mindfulness Summit, and a handful of presenters were my favorites, including Shamash. I liked his easy-going style and humor and I also just like saying his name. He, like most of the summit speakers, has taught mindfulness for many years and has a book on the subject. While I’ve never cared for the title of this book series, I did enjoy his Mindfulness for Dummies and will share some of his mindfulness tips.

Healthy & Helpful Attitude

Shamash tells us that attitude is an important part of mindfulness and that attitude is a choice. Being aware on the attitudes we bring to life – whether it’s marriage or parenting or our work or practicing mindfulness – can affect the outcome in so many situations. We all know people who seem to have a sour outlook on life. Life is not fair. No one has it as hard as I do. Nothing will ever change. Nobody understands. Why do bad things always happen to me? No one likes me. They seem eternally stuck in unhelpful attitudes.

Shamash identifies these helpful attitudes that are the foundation for a healthy life:

Acceptance – not giving up but allowing thoughts, feelings, sensations to exist without resistance

Patience – listen more than you talk, choose the closest rather than the shortest line

Seeing afresh – try looking at common things with new eyes – what have you missed?

Trust – believing that both joys and challenges are temporary/ to be expected helps build trust that things are okay

Curiosity – ask lots of questions about thoughts/feelings/sensations “I wonder what this is about?”

Letting go – First realize what you’re holding onto. Doing so helps to let it go.

This month’s Autism 200 Series class “Multicultural Issues and Autism Spectrum Disorder” will be held Thursday, September 15, 2016, at Seattle Children’s Hospital in Wright Auditorium from 7 to 8:30 p.m. These classes are designed for parents, teachers and caregivers. The topics associated with the majority of classes are applicable to all age ranges and for a wide variety of children diagnosed with autism. This class will be led by Robin Tatsuda, MSW, ARC of King County & Sayaka Omori, M.Ed, Open Doors for Mulit-Cultural Families.

Obtaining a diagnosis and treatment for Autism Spectrum Disorder (ASD) can be an overwhelming process. Complications with long waitlists for initial diagnosis particularly in rural areas, confusing policies regarding insurance billing and navigating a multitude of appointments, and difficulties coordinating care between therapeutic and educational settings can create an isolating and confusing experience for many children and families. These issues often add additional stress to the daily ups and downs of caring for an individual with ASD.

The situation is only made more complex for families from culturally and linguistically diverse backgrounds for whom English is a second language. The ability to communicate information about your child, your family culture, and your concerns and hopes as a parent is valuable and important in ensuring you receive the support you need and your child receives the highest quality of care possible. Thankfully, many professionals, legislators and families are working together in efforts to improve the system of diagnosis and treatment.

Below are several tips that linguistically diverse families may find helpful in navigating the process of diagnosis and treatment for autism:

1.Ask for an interpreter. It is your legal right to access care in your first language for free. You may request a provider that speaks your language. If one is unavailable the services of an interpreter can be provided to help you communicate with your child’s care team. All major hospitals provide these services. For assistance with making appointments at Seattle Children’s Hospital call: 1-866-583-1527. Mention your first language, your child’s name, the provider with whom you’d like to speak.

2.Confirm what your insurance will and will not cover. Visits with a psychologist, psychiatrist, mental health therapist or behavioral consultant are usually billed as mental health services. Some insurance companies cover mental health services the same as medical services, others do not. Important questions to ask your insurance company include:

How many mental health visits are allowed per year?

Can my child see any provider or do I have to choose from a list?

Are there any diagnoses that are not covered?

3.Share about your family and culture. Communicate your family’s beliefs and cultural understanding of what is happening for your child. Share what you believe are your child’s strengths and challenges. Remember, you know your child better than anyone else.

4.Ask for clarification. If you don’t understand what the provider is asking or if you have questions about what they are saying, it’s ok to have the doctor slow down and clarify or give examples.

5.Ask if there are materials and resources available in your first language. Many resources are available in Spanish and other languages and providers will be able to point you in the direction of books and other resources. The Autism Speaks website provides resources in several languages. Resources in Spanish can be found here.

6.Use parent education and support resources. Getting an autism diagnosis and navigating treatment is life-altering. You are not alone. Speaking with other families who may be facing the same challenges and gaining support for yourself is essential in better supporting your child. Ask your provider about connecting you with other families from your language/culture through groups and other supports.

The group Padres Unidos is a support group in Spanish for parents who have children with special needs. This group meets the third Friday of every month from 6-8pm at Child Strive 14 E Casino Road, Bldg. A Everett, WA 98208.

7.Request assistance with making scheduling more convenient if possible. Ask your provider if there are appointments available in the early mornings or evenings or if several visits with different providers can happen during one day to limit the need to take several days off of your own work schedule.

8.Prioritize Interventions. Request that your provider help you prioritize interventions and treatments that are the most important first, if your ability to attend multiple weekly appointments is limited.

9.Connect with school. Inquire if there are services that might be provided at your child’s school or in the home setting to limit the need to travel to clinic for services.

10.Encourage provider collaboration. Request that providers communicate directly with each other rather than you having to pass along the message. Encourage community-based providers to connect with your child’s school.

11.Be an active part of your child’s treatment. Ask questions, speak up, advocate. You’re the number one expert on your child. Your involvement and expertise is a key component to their care. They are lucky to have you and they will benefit from having you involved!

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